Life After Cancer

You’ve completed your cancer treatment-now what? As a survivor, you may have many questions about life after cancer. Things like

• What does it mean to be a survivor? 
• Will the cancer come back? 
• Will I have long-term or late side effects from my treatment? Should I go back to work? 
• Can I go back to the same job?
•  What about my family—how are they doing? 
• Should I think about dating or starting a new relationship? 
• What about starting a family? There is a great range of concerns after treatment. 

Survivors are often surprised by their emotions at this time. You may be excited this phase is over, but also find yourself crying in the parking lot after your last treatment. You may experience fear, sadness, anger, isolation, and grief. You may also feel a sense of relief, gratitude, and be proud of yourself for getting through treatment. It may be uncomfortable not having active treatment and seeing your team so regularly, knowing they are keeping an eye on you and your symptoms. Your family and friends may also say "Congratulations" and "You must be glad to be done". In reality, you may be feeling uncertain about this milestone. Your family, friends, and even your oncology care team may be surprised by the complicated emotions you are experiencing. 

There are many feelings, and none of them is "right" or "wrong."

Coping with Your Emotions After Cancer

Any time of transition in your life can be stressful. Give yourself time to adjust to this new place. You may hear from others, “It must be nice to be getting back to normal.” But as any cancer survivor will tell you, things have changed and maybe so has what “normal” means. Many survivors say they look at life differently; they don't take things for granted and don't sweat the small stuff. A cancer diagnosis changes you as a person, something people around you may not fully understand.

It may be helpful to join a group of survivors, either formally (in a support group) or informally (gather a few folks you have met along the way). Email and the Internet have created wonderful support for all sorts of concerns, and survivorship is no different. CancerCare provides online and telephone support groups and professional counseling. Many cancer centers and cancer service organizations offer support groups for survivors to address their specific concerns after therapy. A peer support or “buddy” program can match you with someone who’s been in your shoes and can be a listening ear and support person – or you can become a buddy to someone else. No one understands this time better than someone who has been there, and this support can be very valuable.  

For many, a cancer diagnosis and treatment is a traumatic experience. Recovering from this trauma can be complicated by the late side effects of treatment. These side effects can impact your quality of life long after you have completed your cancer treatment. Some survivors experience symptoms of post-traumatic stress disorder. This can include sleep disturbances, nightmares, flashbacks, avoiding places associated with the experience (like your treatment center), feelings of hopelessness, anger, and guilt (including survivor's guilt), loss of interest in things you usually enjoy, and substance use.

It is important to find ways to cope with the trauma of cancer and your experiences. If you are having symptoms of post-traumatic stress, ask your care team for a referral for counseling. Your oncology social worker can help navigate your insurance and find an experienced provider who can give you support and therapy. Your team can also refer you for psychiatry support if medication treatment may help treat your post-traumatic symptoms.

Out of trauma comes the possibility of post-traumatic growth. This is the ability to use challenging experiences to change and grow psychologically and emotionally. You may ask yourself, “How has cancer changed me?” Many patients have said, “cancer is the best thing that ever happened to me.” Cancer taught them to live. To appreciate the simple things in life. To love. To give back. To be close to others and show compassion. Even out of the most challenging experiences in our lives, there is room for growth, improvement, and change. After treatment, you may try new things, decide it’s time to take that trip you have always wanted to do, join a spiritual community, or even find a way to “give back” through volunteer work, advocacy, and fundraising for a cancer service organization. All of these activities help you grow after cancer.

Some cancer patients have depression and anxiety during and after treatment. Many patients talk about “scanxiety” when having their routine scans for follow-up. They worry about what the scans may show - “Has my cancer come back?” This is normal after going through such an experience. It’s important to talk to your team if you have these feelings. They do usually improve with time and with your improved abilities to cope with worry and fear. But sometimes they don’t go away or even get worse. This is a time for concern. Signs of persistent depression and anxiety include trouble sleeping (insomnia) or sleeping too much (hypersomnia), hopelessness, inability or unwillingness to participate in normal activities, and even thoughts of self-harm or suicide. If you are having these symptoms, talk to your care team immediately.

How will my cancer care change?

After you have finished active treatment, you will transition to follow-up care.  You will probably see your oncology team less often. 

Be assured that your oncology team is always there if you have any concerns. Plans for follow-up care have been developed to monitor your care. This plan varies by cancer type and may involve periodic blood work, radiology scans and tests, and physical exams. You may only see the oncology team once or twice a year, but they are always a phone call away.

Survivorship Care Plans

A survivorship care plan will help you learn your risks of long-term/late side effects based on the treatment you received. It also gives you recommendations on healthy living after cancer and communicating with your healthcare team. Your care team may have given you a treatment summary and/or a care plan. You can also use the OncoLink's Oncolife Survivorship Care Plan tool.

You may also benefit from a visit to a survivorship clinic. These clinics review your treatment history and develop recommendations for you and your primary care team based on your treatment history and risk factors. Contact cancer centers in your area to see if they have a survivor's clinic or search for a clinic through OncoLink's survivorship clinic list (there may be other clinics not listed here).

Coping with Practical Concerns After Treatment

It is essential to maintain your health insurance after you have completed treatment so you can have the necessary follow-up care. Because your health insurance is often related to your job, you may be wondering about returning to work. This can also help to re-establish some normalcy in your life after treatment. However, returning to work can be a challenge as well. For some, disability is the best option. Talk with your care team about your desire for work after treatment. There are also some great resources for navigating work, disability, and insurance.

• Learn about your rights and your employer's responsibilities under the law. You may want to talk with human resources professionals at your job about things like returning to work, FMLA, and reasonable accommodations. OncoLink's section on legal, insurance, employment, and financial concerns provides great information about these issues.
• Cancer Nation (formerly the National Coalition for Cancer Survivorship) and the American Cancer Society have financial and insurance information for survivors.
• Triage Cancer provides information on cancer-related legal issues, including insurance coverage, employment and time off, and healthcare and government benefits.
• Cancer and Careers is a resource for all things employment-related, from time of diagnosis well into survivorship.

Relationships After Cancer

Cancer can have a big impact on your relationships. This can include our friendships (new and old), our family, our co-workers, or even a dating/intimate relationship. As cancer survivors, you may ask yourself: when, what, and how do I tell someone that I am a cancer survivor? Or maybe, do I even need to tell them?

Telling someone your cancer history can be really challenging if you are thinking about dating and new intimate relationships after cancer. You may have physical scars from your cancer treatment. You may also experience changes to your sexual health and function as a result of your treatment. A new partner may have questions about your fertility. This is a lot for a cancer survivor to navigate. It’s important to be comfortable “in your own skin.” Think about what you want to share with someone new in your life. Perhaps give them small pieces of information to start to gauge their comfort level. If they ask questions about your scars, be prepared with what you want to say about them. Practice your talk with a trusted friend. Therapy after treatment can also help you strategize how to talk with a new partner about your cancer history and its long-term impact on your life.

Sexual Health and Fertility

How cancer affects your sexuality is different for every survivor. Some find the support they need through their healthcare team, their partner, friends, or fellow survivors. Some cancer advocacy groups host discussion boards where you can "talk" about concerns with someone who has been there. The American Cancer Society and LIVESTRONG both offer sexual health information for men and women. Couples and/or sex therapists are extremely helpful for couples who are struggling with intimacy after cancer. Ask your team or social worker for referrals to therapists who are experienced in sexual health issues after illness.

Personal issues related to sexuality or fertility can be emotionally draining and can interfere with personal relationships at a time when you need them most. OncoLink's section on fertility & sexuality may be helpful. Organizations such as the Oncofertility Consortium, LIVESTRONG, and Resolve can help with fertility questions and issues. Zero Cancer and the American Cancer Society both provide fertility and sexuality resources.

All of this can be a bit overwhelming. Take it one day at a time, and seek the support you need to live and decide what life after cancer looks like for you.